[Soccermom]

Written by my BC Survivor friend, Marcia Hahnefield Dietrick and posted on her FB page (with permission for me to post it here!)....

"October used to mean autumn, harvest festivals, jack-o-lanterns, Halloween costumes, and early Christmas shopping. Now October conjures up pink, lots and lots of pink.

I was diagnosed with stage 2 breast cancer in September 2007, right as stores were jumping on the bandwagon to get the pink merchandise on shelves. In those early days, it was quite disconcerting to be confronted with pink ribbons at every turn. No store was safe, no magazine, nor newspaper. There was no place to escape the onslaught. The morning I arrived at the hospital for my bilateral mastectomies, the trees were adorned with pink ribbons. It wasn’t just for me. It was Breast Cancer Awareness Month aka Pinktober, and it was everywhere.

Many people are sick of pink. They claim to be aware enough. The reality is that for everyone who claims to be aware, however, there is someone else equally unaware. Not unaware that breast cancer exists, but unaware of the truths of breast cancer; what it is, what it does, what treatment actually consists of, and the realities of the aftermath of treatment.

The ugly statistical truth is that 1.3 million women will be diagnosed with breast cancer worldwide this year, and half a million worldwide will die. In the U.S. alone, 230,480 women will be diagnosed with invasive breast cancer and 57,650 with non-invasive breast cancer. Additionally, 39,520 women in the U.S. will die of breast cancer this year. Men are not safe either. 2,140 men will be diagnosed with breast cancer in the U.S., and 450 men in the U.S. will die of breast cancer in 2011. Breast cancer is the second leading cancer cause of death in women worldwide, surpassed only by lung cancer. There are 2.6 million breast cancer survivors in the U.S. alone, many of whom are dealing with the lifelong side effects of treatment, and others of whom are dying each day. Breast cancer gets the attention it does by the sheer volume of those afflicted with this disease.

When I volunteer at health fairs, many women attempt to pass by the breast cancer booth, telling me they aren’t at risk because no one in their family has ever had breast cancer. Talk about unaware! 85% of those diagnosed have no family history; they are the first in their family to be diagnosed. Of the 15% that have a family history, only 5% carry the BRCA gene mutation. If you are a woman, you need to be aware! You are at risk.

Prior to diagnosis, I was naïve myself. I grew up thinking breast cancer didn’t kill. It mutilated, but it didn’t kill; or so I thought. My mother was diagnosed in 1969, when I was 2 years old. She had a mutilating Halstead radical mastectomy of the 1960’s variety, and no other treatment. She survived 41 years through sheer luck, ultimately dying of a cardiac event at the age of 84. She was one of the lucky ones whose breast cancer had not traveled outside the breast at the time of surgery.

My first experience with a breast cancer death was a family acquaintance. I remember wondering why she let her cancer go for so long that she would actually die from it. My thought was you find it, you remove a breast, and you’re done. This was the only image of breast cancer I had as a child. It is the blame the victim mentality that we often still see. Surely, the only ones who die are the ones who ignore symptoms. Unfortunately, this is not true. Even women initially diagnosed with early stage breast cancer, may eventually metastasize and die.

Even with the specter of breast cancer looming over me, I always suspected it would be no big deal. I certainly wouldn’t lose a breast, not in this day and age. I figured a little lumpectomy, some radiation, and I’d be done. So wrong, and so naïve. Four years after an early stage diagnosis, multiple surgeries, chemotherapy, endocrine treatments, and I am still a breast cancer patient being actively treated with anti-estrogen medications.

Once I was diagnosed, reality set in quickly as I began learning about breast cancer. Reality smacked me in the face as I began treatment. Reality knocked me down and ran over me as I watched the women I’d met suffer and die.

Breast cancer isn’t pretty, or fluffy or fun. It’s not Barbie dolls adorned in pink, nor cuddly pink stuffed animals wearing awareness ribbons. Nor is it the “good” cancer to get, or the “easy” cancer. It’s mastectomies, chemo, radiation, years of endocrine therapy to prevent recurrence, and ultimately for many of us, death itself. The simple truth is, THERE IS NO CURE FOR BREAST CANCER. Anyone that says there is, is wrong.

Some people will achieve a personal “cure” per se. They will receive treatment, and never recur. This is because their breast cancer was discovered and removed before it left the breast and achieved the power to kill. Unfortunately, medical science cannot tell us who those women are; therefore, those diagnosed with breast cancer are put through the rigors of treatment. The more advanced the stage at diagnosis, the more treatment. Invasive breast cancer is any breast cancer that has broken through the duct, and thereby gained access to the lymph node system, or bloodstream. This means any stage above a Stage 0. The lymph and blood systems are the modes of travel for breast cancer. Breast cancer has a goal, and it is not to hang out it in the breast, but rather to hitch a ride through the lymph nodes or blood stream, in order to colonize the bones, liver, lungs, and brain of its host. All breast cancer deaths are caused by metastatic disease; breast cancer that has set up shop outside the breast. Breast cancer confined to the breast cannot kill. We must have better means of detecting breast cancer before it has left the breast, and we must have a cure for those with metastatic disease.

The horror of a breast cancer diagnosis is that no one can tell who will eventually metastasize, and who will not. Early stage women may still eventually die. Women without positive lymph nodes may still eventually die. Breast cancer is an occult cancer. It likes to hide, to bide its time. It may be quite happy to hide for years. 70% of breast cancers are estrogen driven. Estrogen is the fuel source which keeps those cancer cells alive, and allows them to grow and spread. For women with estrogen positive breast cancers, they can recur years or decades after the original diagnosis. These cancer cells may hide for years before being detectable on radiological screening. That is why many women live for years, thinking they are cancer free, only to recur with metastatic disease years later. I recently had dinner with a friend of mine. We both were diagnosed at a Stage 2. She was coming up on her 5 year diagnosis anniversary of being cancer free. Several weeks later, my friend learned she had metastatic breast cancer. I have seen this happen time and again. It is a devastating reality of breast cancer.

We need research into better screening methods. Despite 10 years of screening mammograms beginning at age 30 due to my family history, my invasive 2.9-cm stage 2 tumor was not detected by medical science. I found it only because it hurt. Never let anyone tell you that breast cancer does not hurt. They are wrong. It may hurt, or it may not. The doctor and I could feel my lump, but the mammogram still could not see it. Fortunately, an ultrasound could. Mammograms are the gold standard of detecting breast cancer, yet they failed me. Ideally my tumor should have been detected as a non-invasive Stage 0 tumor, measuring in the millimeters. Unfortunately, mammograms have difficulty reading through the dense breast tissue of women under 50.

We need better treatments. Treatments that of themselves do not kill. Treatments that guarantee a cure. Breast cancer treatment is barbaric. The slash, poison, burn of surgery, chemo and radiation is not a cure, and can lead to life long side effects and death. The chemo that is supposed to keep us alive can kill us. It can cause heart damage that may take months or years to manifest, or it may cause immediate heart failure. It can cause life threatening allergic reactions. That is why I was doused in steroids before each treatment. Some breast cancer chemo causes leukemia. I have seen women survive breast cancer, only to die from treatment induced leukemia. Chemo weakens the immune system to the point that some of us die from opportunistic infections. Some breast cancer chemos cause permanent neuropathy in the feet and hands. Some damage our bones and cause osteoporosis. Chemo fries the ovaries, and brings on menopause which is often permanent. Chemo took not only all my hair, but it also sent me to the ER with tachycardia, gave me respiratory infections with every dose, caused a painful folliculitis skin infection on my bald head, shrunk my gums to the point that my front tooth veneer fell out of my mouth, and cooked my ovaries. Radiation induces extreme fatigue, and can cause heart and lung issues. The surgical removal of lymph nodes puts a woman at risk of lymphadema for the rest of her life.

Breast reconstruction is not a bonus of breast cancer. It is not a free boob job. It does not by any means compensate for what was lost. My “from scratch” reconstruction which took months to complete, required weekly tissue expansions, and involved 3 surgeries, cadaver skin and some tattooing. It was not the equivalent of a breast reduction or enhancement. The result was two scar crossed silicone rocks on my chest devoid of all feeling. First my breasts were removed, leaving me flatter than a board for 10 months while I underwent chemo and recovery. The process involved removing the breasts, scraping the tissue down to the chest wall, followed by the digging out of a
whole lot of lymph nodes. Ten months later, when reconstruction began, my chest muscle was separated from my chest wall and a couple of flat whoopee cushion looking objects called tissue expanders were shoved under the muscle, and sewn shut. Then on a weekly basis for several months, a needle was jabbed into the metal port of each expander and saline injected to stretch my skin until it reached the right size. This was a painful experience which caused muscle spasms, chest and back pain and a general inability to sleep or be comfortable. Once my expanders were appropriately expanded, then I had another surgery to remove them and replace them with the silicone rocks that are currently holding up my shirt. Mastectomy patients often do not have enough skin and real tissue to cover the expanders/implants. Guess what! I've got cadaver skin under my own skin to help keep these things in place, and to keep them from poking a hole through my own skin. That does happen sometimes. Not to me though, thanks to a dead skin donor.

Successful breast reconstruction is not a guarantee either. I have known too many women whose reconstructions failed due to tissue death or infection.

Even if you have both breasts removed, you still have breast tissue and can still develop another breast cancer. That's because breast tissue runs from collar bone to ribs, and from armpit to armpit. No matter how brilliant, no surgeon can get every single piece of breast tissue out of a field that large. Therefore even after breast removal, it is still possible to develop recurrences on the scar line or chest wall. So in addition to the possibility of becoming metastatic, I can still develop another primary breast cancer in what is left.

My answer to the “losing a breast is not a big deal” comments, is yes it is for many of us. It is a very big deal, with very real psychological fall out. In a culture that worships the female breast, the trauma of mastectomy is very real.

I have heard it said that “at least it wasn’t an internal organ”. Unfortunately, many of us don’t stop at losing a breast if we are young and premenopausal at diagnosis. Ovarian suppression or removal is a common treatment for breast cancer, as approximately 70% of breast cancers require estrogen as their fuel source. This means early menopause. My insides are as devoid of female organs as my chest is of real cleavage. Becoming menopausal at a young age carries with it extreme side effects, and health risks, including osteoporosis and heart disease. Even after menopause, the female body continues to make some estrogen. Therefore, anti-hormonal pills are necessary for those of us with
estrogen driven cancers. Tamoxifen mottled the maculas of both my eyes. Arimidex left me virtually crippled with arthritis and tendon pain. Femara caused mouth and esophageal sores. I am not unique. Many women cannot finish anti-estrogen treatment due to side effects.

We need a 3 prong approach to breast cancer: Awareness – Prevention – Cure.

Awareness: The truth must be known.

Prevention: We have to stop more cases of breast cancer from occurring. That means research into why breast cancer occurs. We have to look at the chemicals we put into food, makeup, lotions, and our environment in general.

Cure: We have to find a cure for those already diagnosed. We have to stop breast cancer from occurring in the first place, then we need to make sure it can never metastasize outside the breast. For those that do become metastatic, we have to find a way to cure them of cancer forever. Current breast cancer treatments can lengthen survival time, but they cannot cure. Breast cancer is smart. It learns how to become immune to chemotherapy. We need treatments that are smarter. We also need treatments that won’t kill. Treatments that don’t damage hearts, bring on lethal infections, cause other cancers or shutdown body systems.

Until we reach the day that we have a cure, you must be aware and protect yourself.

Know the warning signs of breast cancer which include a lump, knot or thickening in the breast or armpit; swelling, warmth, redness or darkening of the breast; a change in the size or shape of the breast; dimpling or puckering of the skin on the breast; an itchy, scaly sore on the nipple; pulling in of the nipple or other part of breast; nipple discharge; or pain that does not go away. Do not let anyone ever tell you that breast cancer doesn’t hurt. Pain is the only way I found my Stage 2 tumor!

Know your risk. Factors that increase your risk include getting older, as risk increases with age. Do not let anyone tell you that you are too young for breast cancer though! I was too young at age 40, as were the hundreds of women under the age of 40 that I have since met; many of whom are now dead. Breast cancer diagnosed at a younger age, tends to be more aggressive and more deadly. The youngest woman I met was 17. She is now metastatic. Other risk factors include being female; carrying the BRCA gene mutation; having a family history of breast, ovarian or
prostate cancer; having a personal history of cancer; previous radiation treatments; a first childbirth after the age of 30, or having never given birth; not breastfeeding after childbirth; early onset of menstruation; late onset of menopause; drinking alcohol; being of Ashkenazi Jewish heritage; being overweight; and using hormones after menopause.

To protect yourself you must know your family health history, and talk to your medical provider about your personal risk of breast cancer. You need to be screened. Talk to your doctor about which screening tests you need, and at what age. Have a mammogram every year starting at age 40 if you are at average risk . If you are at high risk, or have dense breast tissue, ask for additional screening. Mammography is not fail proof, and often cannot see through dense tissue. Most women under 50 have dense breast tissue. Have a clinical breast exam performed by a doctor at least every 3 years starting at age 20, and every year starting at age 40. Perform monthly breast self-exams. The most important thing is to know your body, and know what is normal for you. If you notice something abnormal, seek medical attention immediately. Never let anyone tell you to wait, that you are too young, or that breast cancer does not hurt.

You cannot control all risk factors, and even if you control everything, there is no guarantee. This disease does not discriminate. It does not care if you are “too young for breast cancer”. Nor does it care whether you are single or married, raising children or not, insured or not, in school or not, able to take off work to heal, or not. It’s an equal opportunity killer.

Until the day that no one else dies, until no more children are left behind, until no more spouses, friends, and family are left behind to bear witness, we will not be done"